working things out and, more or less, getting by

The Problem

I’ve been remiss.

It has just occurred to me that I’ve been arguing against a definition of “functioning” without ever actually stating the definition with which I have a metaphorical bone to pick. In the About the Site I wrote that “The Central Thesis of this site is the belief that the higher up a mentally ill person sits on the Functioning Spectrum, the less that particular spectrum (or its definition of “functioning”) actually describes that person.”

I’ll go first: Given my everyday, normal life I could put myself anywhere between 35 and 65 (but not really in the 40s). Because I am in a good marriage, someone who knows me well would probably put me between 60 and 70. Precisely because they don’t know me, anyone else would probably see something above 90 when they look at me, my work, and my life. That being said, at least twice a month, I fall to about 25 for a day…but had I not just written that, no one would know. Since those low points aren’t persistent states, I don’t think anyone who uses this scale would care about them. AND THAT’S THE PROBLEM.

The problem with the “high-functioning” label is that it’s based on these strange and seemingly arbitrary metrics. This is a scale that might make sense for some, but what happens to people who look like a 90 and feel like a 20?

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Define Functioning is an open discussion forum for the self-defined "high-functioning" mentally ill, regardless of specific disorder or diagnosis. At the heart of this site is a belief that the "high-functioning" label is not only misleading, but dangerous. To be "high-functioning" is not to be better, fixed, or cured...it does not even mean that we've figured out how to fully live with and despite our specific challenges.

To further the conversations, any and all contributions are welcome. Please participate in the discussion topics already posted or offer new topics by emailing ∃ at definefunctioning[at]gmail[dot]com.

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“This is a scale that might make sense for some, but what happens to people who look like a 90 and feel like a 20?” Oh my god, yes, that.

Prior to recently expanding the group of people who actually know me and also know about my diagnosis, most people would have put me at a 90+. The few who know me very well would probably put me somewhere between 60-80. But yeah, what about the fact that I have plenty of days FAR lower than that? (Last night being one prime example…and oops, I wrote about it, so now more friends would probably put me just a wee lower!)

On the one hand, I hate the fact that my reality is invisible to most of the world, that the world sees me as a 90+ and therefore assumes I have not a care in the world – it invalidates who I am. But on the other hand, I can’t deny the benefits of being able to pass as “normal.”

I’m embarrassed to admit that your last two sentences say – in two sentences – what it took me two paragraphs to write on the “about the site” page here. Also embarrassed that you were able to sum up DF’s Central Thesis in an elegant “Oh my god, yes, that.” Dammit.

No, there’s no denying the benefits afforded those who can pass as ‘normal.’ Been doing a lot of thinking recently on the nature of those benefits – where they come from, whether they might be double-edged swords cutting both metaphorical ways, whether those benefits might only be short-term. On that last point, and trying to stay on topic (so hard sometimes): Ever wonder whether keeping up the appearance of a 90+ person only means you’re risking more? Wonder whether a fake 90+ life only means that you just created for yourself more to lose if you fail to keep it together? On the flip side, I also wonder the extent to which my 90+ outside is exactly the thing keeping my inside from falling further down the scale. Without keeping up the appearance, I wouldn’t be able to do the work I love, the work that keeps me going, the work that is my therapy. I could do it (because I’m not really a 90+ person) — but I wouldn’t have the opportunity to do it.

Woman, seriously. Please tell me you’re anywhere between LA and Sacramento – the three of us really need to have coffee! The things you posit above are the things that make me a little (more) crazy about this whole bipolar thing – so much of it is chicken-egg. I think my 90+ appearance is the exact reason so very many friends heard crickets from me following my diagnosis – I was in such a fragile state already, everything was raw, and I just couldn’t handle one more sad, knowing look of “Gee, what a shame, we always thought you had it all!” That said, my 90+ life is also absolutely what made me determined to find my way back and get the help I so desperately needed. And every time I almost slipped back into doing shit that would make my wife leave me, the very thought of losing her and affecting my relationship with my child kept me in check (that and a bunch of therapy and then some, but they were the catalyst). So, I think it is a double-edged sword, indeed. But it’s one that I’ll take, because as you said, this is the life I want. And I have it. And god damn it, I’m keeping it. :)

As for your “embarrassment” – don’t be silly. Your writing is amazing, your brain kind of blows me away, and most likely, I based those sentences on reading what you wrote in the first place. So, nah. ;) (And the fact that you even said that makes me even more frightened of just how alike we are!)

“On the one hand, I hate the fact that my reality is invisible to most of the world, that the world sees me as a 90+ and therefore assumes I have not a care in the world – it invalidates who I am. But on the other hand, I can’t deny the benefits of being able to pass as “normal.””

Yes, those are my thoughts exactly! You totally put into words what I was thinking. Sometimes I think it would be great to have people really understand what I’m dealing with in life, and most people I know have no idea about them. Other times, I’m glad I can just pass as normal and not be labeled mentally ill by everybody who sees me. I guess that is sort of an elitist attitude to take. But I would be lying if I said I disliked being able to pass as normal.

No shit, Jen. How many of us want to be crawling around on the floor unable to get up from lack of motivation or just an inability to control the crying? I remember those days and this really feels much better. Dealing with “normal” amounts of personal issues and emotions is quite enough thank you.

Parity. Equality. Equity. This is about to sound super social-work-y and activist-y. None of us will deny that we wouldn’t trade being able to “pass,” because we’re members of an oppressed minority. We’d have fewer opportunities in this world if we couldn’t “fake it.” It’s sick.

But again, there are some trade-offs if we include the things we can do because of this mental illness. Don’t quite know what those are yet, but hey there must be some. Evolution, you know? I used to think I knew what benefits I had, like creativity, more brain cells that allowed me to metathink, sensitivity, but who’s to say which came first. As far as I can recall, I’ve always been different but the obvious signs of the illness didn’t hit me until junior high (not that it was obvious then).

I think I’m just hanging at a 50 these days even tho I didn’t take the damned test. And I think everyone who knows me (other than my clients) knows I’m at that level, too. I wear everything on my sleeve. But that’s changing as I become more adult! hahaha

I realize this may be considered sacrilege around these parts, being that we all self define. That said, based on just a handful of blog posts, I would venture to guess that most people put you far above 50. Not that you don’t feel like a 50, but that you don’t *appear* like a 50. Or, at least, you don’t write like a damn 50. :)

ditto. But I know where you’re coming from in terms of how you feel. Like I said: Inside Me is somewhere between 35 and 65 (the damn scale isn’t good enough for me to narrow it down more than that). I only know the honest Outside You. Inside You is really all you.

the possibility of the greater fall from 90+ is exactly what keeps me from carving out a future, staying in the moment, even if a bit too long. Saw a tweet today that implied the bipolar person thought he could feel spectacular. That did not even enter my consciousness, still doesn’t. I have no dreams (remember?) so I cannot fathom anything other than what I have felt and what I currently feel. It works to some extent as I avoid returning to those horrid days of feeling completely lost and unworthy and afraid of losing my wife. It’s only because I do remember those feelings. But to dream forward? I responded to said tweet with one expressing my fear of flying as it were due to an unwillingness to be disappointed yet again that I could not do something others were capable of doing.

ok, I looked at it. I am 71-80. Besides, symptoms of what? Symptoms of having emotions? Symptoms of being a human instead of a robot? JFC! That is the most absurd thing I’ve ever seen. The fact that I can have my own business, take care of 2 teenagers and one temporarily invalid wife, act like a robot for a while, then realize that’s not going to improve my social functioning should, hmmm, put me in a different category altogether. I think people who really knew me would put me in the 71-80 group, but I think most of them would put themselves there too.

I used to head a bipolar research study at a major research university, and part of my job was to interview people who had bipolar and assess them with the GAF. It was, as you can imagine, difficult. Often I would wonder whether my decision to call someone, say, a 78 was that different from calling them a 74. Often I wondered if my assessments were at all reasonable, or actually meant anything at all with regard to how that person was feeling or living his or her life, etc. I think the GAF is an incredibly flawed gauge for many of the reasons that you all describe above.

AH! Validation! I love it!! Yes, I’m using the fact that someone who once employed the GAF agrees that it’s flawed as validation for the Central Thesis of this site and forum. Thank you. While I’m sure there are many people who can be assessed on that scale, I hold axiomatic (almost) that the “high-functioning” are not a part of that group.

I think I am mostly around a 31, though many times I have been at a 20, and yet, others would say I am anywhere from a 71 to 91 – with the people who don’t know me well giving the highest numbers. That includes everyone at my workplace, my college professors and fellow students, and oddly, people who know me through my involvement in the National Organization for Women and the National Alliance on Mental Illness, who don’t get that I’m sick in hte former instance, an who seem to assume I’m all better now, in the latter instance.

And this all speaks to the problem of a dichotomous relationship between where others would put us on that scale and where we’d put us on that scale. Just want to thank you again for your discussion on the price paid for that dichotomy on the Great Trade-off topic.